It’s been a while…update on the last few months

I can’t believe it’s nearly Christmas (and it’s been two months since I have posted. Way too long!) Things just seem busier than ever at the minute – and I know that goes for everyone. I constantly have a blog post or two in my head but finding that hour to actually get it out of my head and onto this site has seemed impossible lately!

Anyway, this is an update on how Lucia has been getting on at big school and what we have learned so far. It is also a post that I’d love to get some advice on if anyone has any experiences to share.

Loving school

So Lucia has now been at school for three months and she has been absolutely loving it. She skips in most mornings happy to see her friends, enjoys play time in the classroom, getting out in the playground and has a real thirst for knowledge and learning. She is meticulous in all of the little bits of work she has to do, participates really well in class and is loving learning to read and write.

She also still loves doing her homework (mostly!) – she used to ask for homework in nursery as she always loved sitting up at the table while Max was doing his – so now she has her wish. She was particularly excited when she got her first ‘proper’ reading book with words last month and now enjoys pointing out words she recognises when we are having a story. Her teacher also told us she is very well-mannered and well-behaved and always has a smile on her face.

Although Lucia starting school has been a big step, our minds have been put at ease thanks to a wonderful assistant in her class who takes amazing care of her each day. She makes sure her compression garments are adjusted every half an hour throughout the day so they are always positioned correctly, helps her at the toilet, watches her in the playground for any trips or falls, makes sure she is safe going up and down stairs and overall just makes sure she is ok physically and mentally. And Lucia absolutely adores her. Knowing there is someone there looking out for her definitely helps at the morning drop off.

A few things…

However, there are a few things that we have noticed since September, and that is Lucia’s tiredness and sickness levels since she started Primary one. And it is all the time. I remember Max being really tired when he started school and I know all of the Primary one children are exhausted as it is such a huge change to a four year old’s life and routine – but I do think Lucia’s fatigue is more intense.

Nursery was only two and a half hours long and Lucia was in a class of 26 in a separate part of the school. Now she is in for five hours a day and mixing with over 400 children on a daily basis in the lunch hall, playground, assembly and up and down corridors.

Sickness

Since starting in September, Lucia has pretty much constantly had some kind of sickness. High temperatures, sore throats, bad chest, the dreaded vomiting bug and never ending coughs and colds. She has been off school a number of times already, but even when she is ‘better’ she still always has a rotten lingering cough and cold. Then, just when we think she is improving she’ll wake up in the morning completely dosed once again.

So my first question is, do those with lymphoedema or parents of children with lymphoedema find this? We know that the lymphatics and immune system are intertwined and therefore her immune system is compromised, so is this just a normal part of life that we will learn to deal with? Or as she grows up will she grow stronger and more tolerant of illnesses? It’s just not fair and we feel so so sorry for her little pale face.

Fatigue

And then there’s the fatigue – which obviously the sickness also feeds into. But oh my goodness, this is a whole new world of exhaustion. She comes out of school completely wiped out – she is so tired some days that she can’t physically walk to the car and needs carried because her wee legs just can’t manage it. When she gets home it can be tough to get her changed/fed/or homework started because she just can’t physically or mentally manage it and all she can do is get onto the sofa and rest.

She is a lot more teary that she would usually be and will have more frequent melt downs over tiny little things because she is struggling with this fatigue. She has even said to us on several occasions that she doesn’t know why she is crying (or shouting!) and in her words, ‘just can’t control it’. I know I can certainly relate to that – when you are just so tired that all you can do is cry.

She needs wakened every morning and it takes her time to ‘come round’ before breakfast and getting dressed – and some mornings asks to be carried up the path to school. Her sleep can also tend to be quite broken which obviously doesn’t help either – she can be up once or she can be up four times a night which always has a knock on effect.

Her teacher even commented at our parent-teacher meeting that she can see Lucia flagging in the afternoon – and it’s not an ‘I can’t be bothered doing this activity anymore’ but an ‘I can’t physically continue on’ and they will take her work away and allow her to complete it at another time. It’s so good that they understand her well enough to not push her at these times.

Add to that the days that we carry out her Physiotouch therapy and we know she definitely feels more fatigued the day after, as we can see it.

So again, is this fatigue normal? Will it get better as she gets older and adjusts to school life?

Aches and pains

Finally, maybe it is just as she starts getting a little bit older she is learning how to articulate things a little better, but she also now tells us about pains in her legs a lot more often. Nothing major thankfully (apart from today when she seems to have strained her calf muscle) but just general soreness or maybe it’s stiffness. She would sometimes mention her ankle being sore, particularly after ballet, but she has also talked about a sore hip/thigh/knee on both legs at different times over the last few months and at various times of the day.

Again – is this normal?

It can be so hard and frustrating for us as we are always trying to ‘guess’ how or why she is feeling like this since we have no clue really how lymphoedema can make you feel. So if anyone can give us any sort of feedback that you think may be helpful it will be gratefully received.

Happy little lady

Aside from these few niggles, Lucia is still her happy little self and just gets on with enjoying her school life, being with her friends and of course her beloved ballet which is the highlight of her week! We do always be mindful of her tiredness and ensure that we allow her enough rest at the weekends and ballet is more than enough as one outside of school activity. We very much let her lead us and if we have plans to do something but feel she could benefit from a rest day instead then that’s what we do.

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Comments

Hi Jo-Ann. As always, love reading your blog. My boy Christian has been at school for 3 years now (he is nearly 8). He has had several bouts of sickness, but generally self-limiting and, apart from an infection in his LE leg (the horror), nothing too much more than I would expect in the school environment. However, we do know when he is getting sick as his LE leg tends to break out in a rash when he has a systemic illness. It is a bit scary as I never know whether he is developing a leg infection or brewing a virus. Also, unless his is ill, he never seems overly fatigued (constantly resists going to bed in the evening and then up at or before dawn). I actually think this is abnormal and worry that he is not getting enough rest! In New Zealand, kids start school at 5, which maybe allows them to develop their immunity and stamina a little more robustly before being thrust into long school days. In saying that, we may just have been lucky so far, and every child is very different, LE or no LE. Another child we know of the same age with no other obvious problems (such as LE) has been constantly sick with chesty illnesses since starting school, to the extent that his desperate mother has sought help with a homeopath, which she thinks is working (I am skeptical about this and feel that the child’s immunity may be just improving naturally, but who knows) and he has just had a setback with 1.5 weeks off for flu (in summer). Anyway, Lucia’s LE may be contributing to low immunity, but I feel that this will improve and things will be a bit better for you in 2017. . .

Hi Jo, thanks for the reply. Always good to hear how others are managing. That’s so interesting about the rash Christian gets though can imagine terrifying every time. Did he get over the leg infection ok? So far we have been so fortunate and not had any leg or feet infections but we are always on high alert for dry skins, cuts etc. When she is ill we would also find that her swelling would have a flare up as well as her body trie to cope with everything going on. Lucia has just been exhausted totally for the last few months – though she is only four so still so little. I do think you are right and that her immunity will get stronger so we just need to get through the next while and hope things settle down. Now that Max is almost 8 we can see him getting stronger too (he doesn’t have LE as you know but has had his own fair share of issues with a broken leg, allergies etc). We are now off on our Christmas holidays and all so excited! Hope you have a lovely Christmas and New Year!xx

It’s been a long time since I’ve been in touch, but I’ve been following your journey on this blog. I’m so glad you are here – it’s so good to hear about how others cope with lymphoedema.

On the sickness front, it could just be that she is building up immunity. Both of my kids went through it when they started daycare (at 18 months and two years of age) and were exposed to many new kids and many many germs. My daughter, who doesn’t have lymphoedema, was sick at least once a month for a year. Lewis only attends part time (eight hour days, twice a week) and he has had more than his share of viruses. Our GP said that some kids just get sick more than others.

On the fatigue, we haven’t noticed that Lewis gets tired easily. He is an active three year old…I can’t figure out where he gets his energy from since he doesn’t eat that much! Next month he starts preschool four days a week for five hours a day so that might have more of an impact. Definitely something I will look out for now that you’ve written about it.

Lewis does sometimes complain about his right ankle, which is more severely impacted by lymphoedema. Our biggest hurdle at the moment is the very hot summer weather in Sydney and Lewis wearing toe pieces and knee highs with several layers of compression fabric. Keeping cool is a challenge for us.

Wishing you a very Merry Christmas and a healthy start to 2017!
Karen x

Hi Karen, great to hear from you! I’m sure the heat is tough on Lewis and having to wear his garments must be so hard. We rarely have that difficulty with our weather lol! Currently blowing a gale and pouring with rain! School has really impacted on Lucia now that she is in five days a week for five hours each day – that getting up and going every morning is tough plus add on homework’s and daily life and it is a lot for a four year old never mind one with LE. I’ll be interested to see how Lewis gets on but maybe he’ll be just fine, especially since he sounds full of beans! It’s funny how this affects people so differently so it is good to hear other experiences and how everyone manages. Our Max was also hit by a lot of illnesses too though I think I remember him having a break in between sickness whereas Lucia just always seems to have something lingering on in her which must be a constant battle for her wee body.

Anyway, it’s the Christmas hold now and it’ll be two weeks of rest and family time. Bliss! A very happy Christmas to you and your family and best wishes for the New Year!xx

Hi Jo-Ann
Hopen everyone has had a great Christmas.
I am always worried Isla picks up infection still at school I have beeno giving her a multi-vitamin for as long as I can remember (also won’t eat veg, so getting good stuff in where I can).
I totally agree about the fatigue, now in P2 but so exhausted some days she falls asleep on her way home.
I can also tell when her system is low as her ankles become more swollen as does her right foot.
If Lucia would let you give her honey I totally recommend Holland & Barrett they sell Rowse Organic honey it’s only £3.65 and is the best thing I have found for fighting infection colds flus.
I also feel over here the amount of homework they get is ridiculous and issues the cause of many a breakdown at night when she sof tired
Hopefully it will get easier
Heather xxy

Hi Heather. Hope you have had a great Christmas and New Year. It has been so good being out of routine and everyone getting some rest…it was very much needed! Thanks for your comment – school is tough and I agree on the homeworks. P1 isn’t too bad (P2 on steps it up majorly) though with Lucia being so tired after school, like Isla, it can be a struggle some days and she can get upset and frustrated which doesn’t help anyone. I’m sure you’ve been glad to have all had a break from all of that. I also do the vitamin thing – both kids get two spoons of Vivioptal each morning which is a good thing as Lucia’s eating isn’t great in general. Intersting to hear about Isla’s fluctuations in swelling when she is ill – we would find the same with Lucia. Definitely more swollen when her immune system is fighting infection. I will look into the honey – she loves it on pancakes so might be a good option. Anything to feel like we are helping, even in a small way. Talk soon xxx

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Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More